Harm

“What’s the harm?” “First, do no harm.” “Do what you will, so long as it harms none”. I realize the surrounding connotations of these phrases–that these phrases, well, the last 2, are discussed in long essays (like about how oncologists have to cause some harm to treat cancer, for example). I don’t take it lightly, but I don’t want to get into it either. All I want to discuss here is the surface idea of the phrases–the notion that we are “free” to do whatever we please, so long as we don’t harm others. My thought lately is, some things do more harm than is recognized. So much for our “freedom” to do whatever we want, the notion that we are all entitled to our opinions and the murky area of sharing (foisting them on?) others.

During and right after treatment, when I was in my white-hot-angry-at-perky-cancer-culture era, I kicked against the expectations of cancer patient behavior/views. When I started blogging, I found others who said we are all free to “do” cancer as we want. Well, I could get on board with that! But these days I see that idea as, well…an ideal that is not often realized.

A couple of weeks ago I had a conversation on a Facebook post about that woman who made a Holley Kitchen-inspired video, touting woo woo, alleged preventatives for the Stage 4 cancer. (Before even getting into the whole woo alkalizing stuff, the video has some misinformation, like not using the word metastasize, the assumption that recurrence is automatically stage 4….but, moving on.) Two words used in the conversation started making my brain itch: entitled and beliefs.

Now, this is the not the first time I’ve pondered notions like “I believe xyz about cancer”. I’m pretty sure I’ve heard some celebs with cancer, and definitely people on FB, talk about what they “believe” regarding cancer. I’ve ALWAYS found that odd. I’ve associated cancer and illness with science, medicine, proven facts, and belief with that which cannot yet be proven. A client of mine, a science-type, once said to me that theories are beliefs based on observation, and scientists work to prove their beliefs correct. OK, that’s fine–so are these celebs, bloggers, and the woman in the video scientists? You see, to me, when some layperson–myself included–says “I believe this or that” about cancer–it holds no weight. Unless they or I have some method to prove a belief–and I mean real proof, not anecdotal evidence–well, I don’t think the beliefs should be shared in a “I did this and maybe you should too” kind of way. I try to avoid giving advice here on this blog o’ mine, medical or otherwise (well, there was that one time I gave advice, which was: don’t listen to advice). Don’t listen to me–I’m an idiot!

Proselytizing is the concept that occurs to me every time I see woo woo videos and such. I was once watching a documentary that was supposed to be about nutrition (or lack of) in the modern world, that wound up being one long infomercial about juicing. All those woo woo bits, to me, have that strident, “you must do this just like me, it saved my life” urgency to them, and I just back away, slowly at first, then I run. I don’t wanna be recruited! And proselytizing is how this video struck me. Or at least like those olden times traveling medicine shows with those magical elixirs.

Now, here in America, we like to yell, “it’s a free country”, and we have the right–heck, we are entitled–to do and say what we want. Sure. And we are free to choose to listen to and follow others, or not. As misanthropic as I am, I try to assume people are intelligent, they can make choices. If others watch this video and decide to engage in the woo practices–what’s it to me? Their lives, their money–not mine. It is not my responsibility to dissuade anyone. Or is it? As I asked (rhetorically) the person with whom I commented on FB, is it an obligation? I think, no, not really.

So what’s the harm? OK, now here is where it gets a bit tricky.

In the specific case of the video in question, to be sure, there was a hint of blaming the patient. Apparently a woman diagnosed and finished with treatment for Stage 3, the video-maker is now bent on being proactive to prevent metastatic recurrence–thereby implying those who HAVE had such recurrence were slacking off and deserve what they got. A cruel impulse I quashed when encountering a tearful fellow “survivor” in a focus group was to ask–well, why did you NOT do all these “good” behaviors in the first place? I’m experiencing that cruel impulse again toward this woman. Most of us in the disgruntled section of CancerLand (probably only the disgruntled read my blog, so I don’t care), know this woo and blame stuff is folly. But the general public does not think deeply about these issues and swallow any tidbits Dr. Oz/daytime TV/fake-ass morning new shows spoon feed.

There is plenty of stigma and blame in all cancer culture (some cancers more than others to be sure)–it all has to do with fear and the illusion of control, I know. But this blame game is one of the few issues that still makes me go from an eye roll and a shrug to screaming rant mode in a second. (See Did You?) And you can just bet casual FB scrollers will see this video and not understand all the surrounding crap and say casually to their nearest friend with cancer: “have you tried drinking boiled bark water during the full moon?” (Yes I made that up, because that it is what it sounds like to me.) These days I have my response ready to fire away at such foolishness, but I remember where I was about 5 years ago. And I know others are likely in the same spot–and how damaging and tiring it is to hear this kind of crap. I know I blamed myself, and occasionally self-blame still haunts me. It was very painful to know others kind of blamed me too.

Now, some will likely not agree with the connection I’m going to draw here–but here goes. To me, saying people are allowed to “do” cancer any way they like when talking about woo woo medicine is very much like the allowance to “do” cancer by dancing before your mastectomy, or lauding a celebrity for having a well-publicized goodbye boobies party. No it is not for me or anyone to criticize how these women “do” cancer–they are “free” and “entitled” after all. But I am free to not like it, and to say so. Yes, the worst part is the reactions by media and FB commentators, praising the positivity on display and blowing off critics with a breezy “haters gonna hate” (oh for the love of syrup can that phrase be banned this year–I hate it that much). But what happens when these viral sensations occur is they become a measuring stick to which we are all held, and believe me, according to these standards I came up quite short. What I mean is, happy dance parties perpetuate the single story, and we all know how dangerous that single story can be (thank you Chimamanda Adichie).

Am I proposing that all cancer patients all stand together and hold the same views–my views? Of course not! The opposite in fact–because the truth is, the general public already thinks of us in that single story way, that once we get cancer, we put on a Uniform, we all march to the same beat. Am I suggesting no one ever dance in a surgery room again, hold a goodbye boobies party again, claim to be a warrior who kicked cancer’s ass again? No, I merely do no want these individuals’ behaviors to be held up as templates for the rest of us. My fantasy, sadly doomed to be unfulfilled, is for cancer patients to be seen as vastly different individuals with wildly diverse attitudes and approaches to our disease.

What is the responsibility of these social media viral sensations to the rest of us cancer patients? What harm are they doing to those of us who reject their woo, their dancing, their “tee-hee boobies” parties? An interesting question to ponder–my first thought is there is none. But on the other hand, if anyone, particularly celebs, puts themselves out there as an example to be followed, well, criticism and challenges must be expected, it ain’t all gonna be applause and thank yous. Let me put it this way: sure, the dancing mastectomy woman can boogie all over and perhaps it is silly for me to think it harmful to me personally–but, hey I am VERY glad that video went viral well after my own surgery, my own post-treatment dark period. Because I sure as hell would not want to deal with anyone suggesting I look at that video during what was my lowest time.

I wish I had a more definitive answer or solution–I’m aware most of my posts merely pose questions for thought, not for action or, gasp(!) examples to follow–remember I said above–I’m an idiot–don’t do anything I did! Ah, the idea I lack convictions or solutions is a post for another day.

While I’m not sure a solution exists, I still think this is an issue for discussion. Like I said above–the idea we can all do cancer however we want is an ideal not a reality–because of that single story, that single standard to which society holds us. I worry to not acknowledge it is to be dangerously naive.

20 thoughts on “Harm”

Ah, man. Does it seem like there’s even more science-deniers floating around these days?? I have a master of science degree, and it’s in fact my job to uphold the principles of science with my patients, and sometimes, that means I do have to point out that their woo woo beliefs may cause themselves harm. And that’s hard enough to deal with. The kind of publicly-advertised, mass-distributed woo woo you’re talking about just makes me crazy. And I do think it’s harmful, like scientologists who don’t take their child who has pneumonia to the hospital because of their beliefs, and then their child dies. That’s what’s wrong this kind of thing. It blows my mind. No, science is not perfect, but it does make an attempt at least to establish facts and proof. It’s okay to believe in fairy tales, but to advise others to treat their cancer according to fairy tales, and then to draw some kind of causal relationship between cancer recurrence and not adhering to these fairy tales, is total crap.

Yeah, I do think she was out of line. But part of me thinks that to suggest she or others should stop because of the desperate people out there–it is vaguely insulting to those desperate ones–like I’m “protecting” them from their choices? I guess that’s why I struggle with it.

Yeah, I get that. But there’s a difference between helping provide someone with reliable information so they can make their own choices, or warning them about snake-oil salesmen and women, and trying to protect people from the choices they ultimately, which we can’t really do. So I guess all we can do is put out those warnings if we can. And I have no problem with that, and I don’t think it insults anyone. Their intelligence is already being insulted by the Dr. Oz’s of this world. Can’t always help people who are desperate, gullible, or looking for an ‘easy’ fix, though, can we? *sigh*

You know it’s funny–just last week someone I know slightly was telling me essiac tea had helped her husband’s cancer shrink after the chemo had failed. I was looking it up online as she was speaking to me and my client and landed on some woo woo site. I felt myself –a rational, skeptical, grumpy person–get swayed and even thought–what’s the harm in trying it? So yes, I guess I go back to my thought–this stuff is harmful and even if people can think for themselves, educated, rational people–I mean, being seduced by this sort of thing can happen. Ugh.

Hi CC,
I didn’t see the first video you mentioned. I saw it float by in my feed, but didn’t click. I”m trying to click less on certain stuff… But that dancing doctor before her mastectomy video really irked me, as you know. Not the fact that the woman danced, but the fact it went viral and was held up as such an amazing way to handle a mastectomy. The woman was even invited to be on GMA for crying out loud. That’s my problem. And that kind of thing is harmful IMO. Another thought-provoking post. Thank you.

Oh yes, I REALLY shouldn’t have clicked–ha ha. Tho’ in the case of the documentary I mentioned–I was completely caught off guard! False advertising–or at least the description blurb was a bit deceptive!
Yeah I hear what you’re saying, that dancing woman video was too much–I remember at the time I just couldn’t even write about it or process it–I just had to look away. I certainly don’t think there should be some kind of “decorum” for patient behavior, and I’m sure the woman had no intention of it going viral and having the reach it had. But once it did, for the few things I saw about her (I REALLY avoided it), it did seem like she was trying to “set a positive example” or “inspire” other BC patients. I guess I just kind of have a hard time with people claiming to speak for or represent ALL BC patients, or setting some kind of example I’m supposed to follow. It just rubs me the wrong way. Because society loves “the brave face”–I mean OF COURSE that video would go viral–people like feel good crap. So yeah, I can groan about the reaction — but it was predictable, so I am trying to own up to the idea that I kind of resent she even did it. I’m not making sense here, I’m rambling. And nope, I have no solution. I guess the best I can do is try to point out why stuff like this drives me batty…and hope some of it gets thru to people! Sigh, thanks!

Excellent post! Stories of success of treating breast cancer with unconventional medicines show a lack of critical thinking for all who climb aboard. The only thing it does is silence the cellular truth about this disease which is so complicated scientists are not close to comprehending all its intricacies. People are further hurt when reports of cancer news from early trial results in petri-dishes or mice cause people to make the leap that the result must be true in humans. While I find the reports interesting I have wondered about their usefulness for a general audience. Recently I read stress hormones in laboratory mice caused their cancer to spread. Of course that only serves to have people continue what is already believed to be fact that “stress causes cancer”, and people whose cancer spreads must have not handled their stress well. Other important factors surrounding the progression of the disease–in the mice–besides the stress hormones are not considered, and no one cares. Tagging unscientific claims with a flashing red-lettered sign would be helpful but not practical. Who would be in charge, and who would oversee their actions? We must unfortunately resign ourselves to the fact there will always be idiots among us—of which you are not one. It bothers me. I want to educate others so those that haven’t been sucked into magical medicine are not and maybe save some that already are along the way. How? Seems impossible with Alternative and Complimentary Medicine merging into Integrative Medicine and being promoted by scientific institutions like MD Anderson. It appears that magical medicine is here to stay—sad.

You know, you got me thinking which is worse–these “alternative” things that come with the headline “doctors or big pharma don’t want you to know….” or these headlines of medical studies–which are TRUE but all distorted in the reporting. I kind of think the latter is worse–at least the science is real (rather than you know, the alkalizing crap), but things get overblown. Like there will be some breakthrough or new results from a study–and they turn out to be not so new or not helpful to many (the mammogram studies come to mind–I keep hearing the same report over and over, yet it keeps being announced as new–puh-leeze). At least when I see a headline about woo stuff–I KNOW it is woo. It is hard for me at times to realize that lots don’t recognize woo. Or won’t allow themselves to doubt it just because they want to have some control.
Yeah, I was advised to check out some integrative stuff while in treatment; I had and have some friends into that kind of thing. Ugh and don’t get me started on the ethics of magical THINKING in the medical world. I’m very alarmed by the promotion of personal stories touting positive attitude on billboards I see on my daily drive, all advertising for the local hospital. Shudder. Thanks for dropping by!

(Complementary is not spelled with an “i”–oops)
I agree–real science reporting and the distortion that occurs with it is worse.
Woo medicine often has real science connected to it–or what sounds like could be real science–to suck people in which is unfortunate. It takes time and a desire to learn to uncover what is real and what is not. Perhaps the desire to maintain hopefulness is found in not knowing. Maybe I should quit worrying about what people believe or don’t. We all die. Our doctors guide us in that direction. Then again I want to know and others to know as well what will actually help keep a person alive–with good quality of course–longer. And where is the logic in magical thinking? People are indeed interesting.

You make some really excellent points here. I am 100% in agreement with you when you say society already has one single standard for cancer patients. I am faced with this challenge quite often with a few of my friends. For example, last year I shared an important video about the language used in cancerland, specifically the use of the word “battle” when someone dies from cancer. I immediately received some reactions from friends. One basically told me that it is ‘sad’ the way I think of cancer, and that other cancer patients are living their lives fully and happy. Now while I am not disregarding the possibility of other cancer patients living their lives fully and happy, I am not sure where she got her information from considering she herself hasn’t gone through cancer and doesn’t know anyone who has, except me. Her comment was hurtful and I let her know about it. She was defensive in saying that just because she hasn’t walked the cancer path, it didn’t mean she was ‘dumb’. Now I never called her dumb, but I stressed her lack of awareness. She then proceeded to say that she has seen interviews and videos of happy patients. Now I am expected to act happy too.

I don’t doubt that the exposure to such videos — those of happy-go-lucky patients — has blinded society from the other reality that is living with cancer (at any stage!). I don’t doubt that there are patients who live happy or content with their reality. And it’s fine for people to choose how much information they want to overwhelm themselves with. Truthfully, I think that is the main problem. The other part of the problem is the organizations that back this up. We never hear or read ads by cancer institutes stating the level of physical and emotional pain their patients go through. So while society welcomes these stories of patients celebrating their triumphs (because it is what they feel comfortable with), organizations aren’t helping. And I totally agree it is harmful to only expose one side of the story — but, people like their safe world.

About those videos that mislead people about scientific facts, I am afraid these will never go away. It is soooo hard for me to ignore those on social media! A family member was dx with leukemia and was treated for it. She is still in remission. But just recently she sent me a video of one of those miracle cures for cancer and informed me that she would choose this route if she has to face cancer again. I told her she would be missed. Yes, all of this is harmful. And there’s a lot that needs to change in order to achieve some level of progress. Wondering what we should focus on first.

Oh I’m glad you are rambling–this post was meant to provoke thought and conversation. I’m still not sure of the answer if there even is one to be had! Having been on the receiving end of people telling me I was doing cancer wrong by not being happy about anything, it is unfair for me to say anyone else is “wrong”. But on the other hand, having met via blogging so many others who are certainly not doing any happy dances–well, while it is comforting, it is also infuriating that the norm is constantly reinforced. Like I said to Nancy above–I’m trying to own my resentment toward the dancers and party-throwers, for reinforcing the same old narrative–even tho’ this makes me judge-y and kind of wrong.
As for the woo stuff, and your family member’s choice–here is a link to a post I forgot about when I posting this–I meant to include it: it’s about a doc who lets his patient do the woo woo stuff. Mostly it seems to be about paternalism in the field, but for me, I had other issues with it. http://www.kevinmd.com/blog/2016/02/key-shared-decision-making-patients.html
I suppose many others would say that this sort of question or issue is not worth focusing on first–people are dying of mets. And that is true–but I cannot help but think that these antics distract and distort. Society praises the woo woo woman for being “proactive” and reinforces the blame game. Society praises the dancers and party-givers, and lull themselves into a false belief that things are not so dire, it will be alright. I guess that is why I raised the question of harm.
Geez now I’m rambling!

I absolutely agree with the issue of cancer hospitals advertising their abilities by showing happy go lucky people gushing about how lucky they are to have found that hospital. Well, one of those hospitals frequently advertised screwed me up so bad in my surgery in 2012 that I am still suffering from that time (thyroid cancer not breast). I even called them out on how beautiful their waiting rooms were when their machines were so old. I took an MRI in a 12 year old machine that shook and left me bruised and disoriented!! But, God, that waiting room was first class…

I was also recently diagnosed with an incurable leukemia. My best friend died two years ago of a similar cancer (she had had it for a long time. I am newly diagnosed) and it was a horrible death. Before you judge someone who, even tho I don’t know what your friend said (I myself have already expressed my will to move to another state that condones choosing your time of death under medical conditions.) My family tells me to “stop talking like that”. OK, you know what – you choose not to give me love and support. You choose to not visit. When my time comes, if it does include the cancer, I do NOT want to be alone! I do NOT want to live in pain in a hospital (GOD FORBID!!!!). I am done being brave and living for my family. I need to live (and die) for myself. So if and when the time comes it will be MY ultimate decision, not theirs. But now is not the time that needs to be put aside for talking about it as it is still a long ways away.

I think we need to focus on being supportive and just listening to people who are undergoing the cancer journey – sometimes supported, sometimes alone. I find those with a good support system of friends and family seem to handle things better, which makes sense. And those of us who handle it alone, even tho we have family, don’t handle it as well or perceive “the end” quite differently. Talking things out with someone who does not judge does make a big difference in coping.

I also have found that staying away from all those cancer videos online and articles about miracle treatments is the best option. My friends rarely bring up the cancer issue and certainly don’t tell me about videos they have seen!!! I have never heard anyone say anything about a new treatment, how come I’m not like “woo woo” woman. Stay with respected hospitals and sites online for information and don’t put yourself in the position to get upset about someone else’s cancer experience. We all know each person’s journey is uniquely their own and how they choose to handle it is entirely their business. If the public chooses to make videos go viral, maybe it’s because it makes them feel good – not to see someone with cancer dancing and happy about losing their breasts (!) but just because it’s not something that is done everyday. Personally, I can’t imagine the nurses in the hospitals I’ve been in even smiling, nonetheless dancing!!!!! I look at the faces and if there is happiness there – power to them.

My cancer experiences have been nightmares and I keep mostly to myself, immersing myself in my favorite books. Sharing, when I find a soulmate. Keeping silent at a family gathering when told “not to talk about my medical condition as this is a happy occasion” which is what I was told by a member of my family over this past Easter!

And suddenly realizing that all this time I thought people were ignoring me and my illnesses when in reality they were never advised of my situation. I was allowed to simply disappear off the face of the earth. And no one thought to question why….

All I can say is, I completely agree. The only thing I know for sure about cancer is that it affects everyone differently, and there is no “right” way to deal with it. (Guess that’s two things, but who’s counting?) Anyone who thinks their way is the only way has a standing invitation from me to go ahead and dance right out of my sight.

Agreed. Sadly, most people think there really is only one way–I sure did when I entered CancerLand and was distraught when I found I was not measuring up. That’s why stuff like the dancing and parties trouble me so. Until I found the like-minded on social media, it was awful, ’cause the general population thinks people like those women are the standard bearers!

I believe that everyone is entitled to handle their cancer or their serious illness or even a sore throat, in their own way. If it helps them deal with it, why is it wrong? if it goes viral and you don’t like it – don’t look at it. It doesn’t have to help anyone but the person who is involved in doing it. I personally don’t think anything applies to me when I see things online. I look at the faces of the people who are involved in it and if they are happy – great. If they are fearful and they are trying to lose that fear and these videos might help them get over that fear – great!!! To each his own. I have had breast cancer (or not breast cancer to those in the support group I went to who, because I did not have a mastectomy was not allowed to voice an opinion in the group, which needless to say, I never returned to), then I had thyroid cancer, then last October during an emergency gastro surgery, CLL (incurable leukemia) was found!! I have people tell me all the time ” think positive!” Yeah, OK – YOU think positive. I have it – you don’t. And don’t get me started on all the famous people who come out with their cancers. Hell, if I had the support and friends and fans that you had, maybe I would be able to think more positively but I tell you what – I have almost no support except for my husband, my mother, and sometimes my children. One daughter tells me “oh mom, there are people who have it so much worse.” My reply now is, “Everyone has their own cross to bear and it is not for anyone else to judge how a person reacts to it.” If someone believes that green eggs and ham will cure their cancer, well, that’s their reality, and if it their cancer happens to go away – WAS IT the green eggs and ham?

That’s just that tho’, we can say we are allowed to do cancer or whatever we want, but are we really? We CAN, but we have to put up with pressures to behave in the socially acceptable ways. I mean, I handle it better now that I’m 5 years out and spend most of my time with dogs not people, but during treatment–ugh!